Jonathan O'Grady

Yes, hello, good morning.

This is a really good news day.

We're absolutely thrilled at SMA Ireland that SMA is going to be included in the Hillbrick test from today.

We started this campaign, oh, I mean, in earnest, probably back in 2022,

There's a lot of hurdles you have to overcome.

HICWA has to do a health technical assessment.

The minister then takes that review and has to approve the test for inclusion.

And then the long journey of actually implementing the test begins.

And we were hoping that that would be done in a year.

We were a little naive.

Here we are some two and a half years later, but we're glad we got here.

That's right.

SMA is a neuromuscular condition.

It's genetic.

I have it myself.

It's a spectrum condition.

In its worst form, untreated, you would expect unfortunately a child with it to not survive past their second birthday.

However, in its more milder forms,

a child could crawl, may stand and fall over, or may even walk as a toddler and then cease walking later.

The important thing to know about SMA is that it involves the degeneration of the motor neurons.